Monday, May 6, 2013
I Saw You Today
I saw you today. I was standing waiting for the microwave so I could heat your food that you eat through a tube. As I was waiting for my turn, I saw a vibrant little girl with beautifil long blonde hair. She was wonderful. She was lost in her child exuberance while I tired not to stare. I asked her mom how old she was and she said she just turned three. You are three too. The longer I sat there the harder I hurt. In her perfect little way she reminded me of you. She reminded me that the three year old you I grieved years ago was still in my mind. She made me see the you that I didn't even know I missed. She brought out feelings I long locked away, stuipdly thought were gone. I mourned for your lost life of freedom and normalcy. She reminded me how perfect you would have been if you could have been able to run, talk, eat. It hit me like a truck how much I missed the you that never has existed and it made me sadder still that I missed you like that. I saw the you that you will never be and the freedom of being born without your illness and it stings. I love you so much and you amaze me at every turn but I miss the you I knew before I was privy to the circumstances of your health. I saw you today and it hurt.
Thursday, July 19, 2012
Get Real
I've been truly neglecting my blog. It's not that I haven't had the want, nor the need, to write; I just haven't had the time. I've been in the midst of so many unbelievable things lately and, like most hurricanes, I was swept away from myself.
I've recently been in a kerfuffle over Scarlett's care. I brought her into a hospital and issues ensued. There is confusion over her palliative status. I refused transport by ambulance because she was truly, in my opinion, not that sick (shouldn't my opinion count for something by now?). I was threatened with Family Services if I did not comply. Albeit, the doctor on call did not know Scarlett, did not know me, and therefore, made the best decision possible regarding her health that he could make. But it wasn't an informed decision because I wasn't consulted and that's where the problems arose. It's a good thing though, this bump in our lives that happened. Now, there are safe guards in place.
Our hospital has been influx for a number of years, as most small towns have. Having regular doctors here just didn't happen and now we're fully staffed. The issue is that none of them know me. None of them trust me. And now, with this glaring issue in the forefront, I'm wondering who is left to take on my daughter's care. I tried to secure someone, as they requested, and was turned down by the "collective" medical personnel. Now what....I have to take more time off from life and see who else may take charge of her care? Why don't they just tell me who got the short straw and get it over with? My time is valuable and I tire of these games easily.
They are worried that I haven't come to terms with Scarlett's palliative status. *Scoff* Ahem, excuse me while I cry tears of laughter. I have known for years now that Scarlett will not be here as long as her brothers. I feel the tug of my heart knowing I will bury my child. I've made peace with the knowledge that my sweet girl will cease to exist and life will go on without her. That does not mean that I will allow her to slip away prematurely, that I will give her no chance tomorrow because she is ill today, nor does it mean that one significant hiccup in her health should determine that she is beyond a right to live that we all assume non-ill people have. Scarlett fucking matters! Yeah, I swore. You would too if you were essentially told to give up on your child too.
I was told my Facebook page for her is an issue. They are worried about me ruining their careers with a few swipe of the keys; turning a small town against them and instilling fear in the community. Why can't they look at my page as a way to provide excellent care and get a bit of PR out of it? I understand the fear, I've seen it many times before with Scarlett. The sweet angel faced child who holds so much mystery and instills fear into those responsible for her. There is a great attachment to Scarlett once you meet her and I think part of the reason for that fear is because she so easily creeps into your heart and, suddenly, you've got a stake in life and can't be the one holding her at the end. Who wants to be the one that has her die on their watch, in their care? I get it but fear is not the best way to rule your actions (unless being chased by a dragon).
We have a meeting with our local Social Workers next week to ensure that Scarlett's issues are known and that SW cannot be used against me whenever I don't comply with medical wishes. Ok, if I were to beat her, yeah, they can be called (and should be) but not for refusing over the top care. If SWs were called, there would be no where in the province to put her. There is no care as specialized as what she receives at home. In just mere days, she would die. Those who truly know her understand this as sure as the sky is blue. And who removes a palliative child from the home just because of a parent's refusal to leave town for a non-emergent issue? I've kept her alive thus far. Yes, the medical people have done some fancy foot work to get Scarlett to this point but if I don't bring her in, there can be no treatment. If I don't keep a firm grasp on every breath, diaper, berry used in her food, sleep patterns, medications, previous hospital care.....where do you start looking for issues? If I'm good enough to supply you with answers to every question then I'm good enough to make care choices for her. Plus, you rely on me to follow through on medications, appointments, physio.....You can't have your cake and eat it too. I don't have a medical degree but I live with her and, dammit, that counts!
Another issue is that the group needed to know how far I was "allowed" to go regarding Scarlett's care. In other words, they wanted to know when they can over-ride me. They can't. No matter what paperwork I sign, no matter what treatment is put forth, I decide everything. Isn't that the "perk" of a dying child? To at least have the right on how far to push her care? Just because she's palliative, doesn't mean that she will die today, or tomorrow. It just means she's not going to become an adult (with all reasonable expectations). This is not new to me. It may be new to you but that's not my problem. Get yourself up to speed. I have other stuff to do besides hold your hand. I was left to navigate on my own. At least you have me to help. Don't automatically assume that my name needs M.D. after it to make my decisions matter.
Again, the issues going on in our lives are being one sided. The only things here they are seeing are the things that involve them. They don't see the work at home. They don't see the calls, the prep work to go to appointments in another town, the childcare needing to be in place because ~guess what!~ I have 2 other kids that need me too. The paperwork, the sleepiness, the drug managing, the seizures, the fact that our house is usually a +1 at most times during the day, there is no privacy. It's not just go sit at the doctors and then go back to la la land. It actually takes a lot of planning to just go down the street for an appointment. And this recent turn of events has screwed me.
I have renos to be done for Scarlett. Our deck was supposed to be easy. It was taken down over 2 weeks ago and nothing has been done since. That sucks. We used the deck. Even if it wasn't wheel chair accessible, we still used it. And now we're stuck without it. Not happy about that. But it's just another example of things that I have to focus on, knowing that I can't truly get on it. Like everything else.
The best part out of everything, besides the fact that Scarlett & my boys are currently healthy, is that my home care team is nearly finished. I only have one more person to bring up to speed. There's so many people now that I feel the need to sit everyone down so they can all meet and see who is on the Scarlett Squad. These are my most trusted people and I will finally be able to delegate some of my crap so hopefully things will be easier on my family (and I won't be running around from task to task like a chicken with her head cut off).
I suppose thought, it's food blending & drug dosing time before my angel with a devil's 'tude wakes up.
I've recently been in a kerfuffle over Scarlett's care. I brought her into a hospital and issues ensued. There is confusion over her palliative status. I refused transport by ambulance because she was truly, in my opinion, not that sick (shouldn't my opinion count for something by now?). I was threatened with Family Services if I did not comply. Albeit, the doctor on call did not know Scarlett, did not know me, and therefore, made the best decision possible regarding her health that he could make. But it wasn't an informed decision because I wasn't consulted and that's where the problems arose. It's a good thing though, this bump in our lives that happened. Now, there are safe guards in place.
Our hospital has been influx for a number of years, as most small towns have. Having regular doctors here just didn't happen and now we're fully staffed. The issue is that none of them know me. None of them trust me. And now, with this glaring issue in the forefront, I'm wondering who is left to take on my daughter's care. I tried to secure someone, as they requested, and was turned down by the "collective" medical personnel. Now what....I have to take more time off from life and see who else may take charge of her care? Why don't they just tell me who got the short straw and get it over with? My time is valuable and I tire of these games easily.
They are worried that I haven't come to terms with Scarlett's palliative status. *Scoff* Ahem, excuse me while I cry tears of laughter. I have known for years now that Scarlett will not be here as long as her brothers. I feel the tug of my heart knowing I will bury my child. I've made peace with the knowledge that my sweet girl will cease to exist and life will go on without her. That does not mean that I will allow her to slip away prematurely, that I will give her no chance tomorrow because she is ill today, nor does it mean that one significant hiccup in her health should determine that she is beyond a right to live that we all assume non-ill people have. Scarlett fucking matters! Yeah, I swore. You would too if you were essentially told to give up on your child too.
I was told my Facebook page for her is an issue. They are worried about me ruining their careers with a few swipe of the keys; turning a small town against them and instilling fear in the community. Why can't they look at my page as a way to provide excellent care and get a bit of PR out of it? I understand the fear, I've seen it many times before with Scarlett. The sweet angel faced child who holds so much mystery and instills fear into those responsible for her. There is a great attachment to Scarlett once you meet her and I think part of the reason for that fear is because she so easily creeps into your heart and, suddenly, you've got a stake in life and can't be the one holding her at the end. Who wants to be the one that has her die on their watch, in their care? I get it but fear is not the best way to rule your actions (unless being chased by a dragon).
We have a meeting with our local Social Workers next week to ensure that Scarlett's issues are known and that SW cannot be used against me whenever I don't comply with medical wishes. Ok, if I were to beat her, yeah, they can be called (and should be) but not for refusing over the top care. If SWs were called, there would be no where in the province to put her. There is no care as specialized as what she receives at home. In just mere days, she would die. Those who truly know her understand this as sure as the sky is blue. And who removes a palliative child from the home just because of a parent's refusal to leave town for a non-emergent issue? I've kept her alive thus far. Yes, the medical people have done some fancy foot work to get Scarlett to this point but if I don't bring her in, there can be no treatment. If I don't keep a firm grasp on every breath, diaper, berry used in her food, sleep patterns, medications, previous hospital care.....where do you start looking for issues? If I'm good enough to supply you with answers to every question then I'm good enough to make care choices for her. Plus, you rely on me to follow through on medications, appointments, physio.....You can't have your cake and eat it too. I don't have a medical degree but I live with her and, dammit, that counts!
Another issue is that the group needed to know how far I was "allowed" to go regarding Scarlett's care. In other words, they wanted to know when they can over-ride me. They can't. No matter what paperwork I sign, no matter what treatment is put forth, I decide everything. Isn't that the "perk" of a dying child? To at least have the right on how far to push her care? Just because she's palliative, doesn't mean that she will die today, or tomorrow. It just means she's not going to become an adult (with all reasonable expectations). This is not new to me. It may be new to you but that's not my problem. Get yourself up to speed. I have other stuff to do besides hold your hand. I was left to navigate on my own. At least you have me to help. Don't automatically assume that my name needs M.D. after it to make my decisions matter.
Again, the issues going on in our lives are being one sided. The only things here they are seeing are the things that involve them. They don't see the work at home. They don't see the calls, the prep work to go to appointments in another town, the childcare needing to be in place because ~guess what!~ I have 2 other kids that need me too. The paperwork, the sleepiness, the drug managing, the seizures, the fact that our house is usually a +1 at most times during the day, there is no privacy. It's not just go sit at the doctors and then go back to la la land. It actually takes a lot of planning to just go down the street for an appointment. And this recent turn of events has screwed me.
I have renos to be done for Scarlett. Our deck was supposed to be easy. It was taken down over 2 weeks ago and nothing has been done since. That sucks. We used the deck. Even if it wasn't wheel chair accessible, we still used it. And now we're stuck without it. Not happy about that. But it's just another example of things that I have to focus on, knowing that I can't truly get on it. Like everything else.
The best part out of everything, besides the fact that Scarlett & my boys are currently healthy, is that my home care team is nearly finished. I only have one more person to bring up to speed. There's so many people now that I feel the need to sit everyone down so they can all meet and see who is on the Scarlett Squad. These are my most trusted people and I will finally be able to delegate some of my crap so hopefully things will be easier on my family (and I won't be running around from task to task like a chicken with her head cut off).
I suppose thought, it's food blending & drug dosing time before my angel with a devil's 'tude wakes up.
Tuesday, June 19, 2012
Contaigous Feelings
Ever heard that your mood is dependent upon who you hang around with? If you posse up with depressing people you start to brood. If you mix with happy people you walk around with a smile. It's true, you know. We are influenced by the feeling of others and sometimes don't even know it.
I have been feeling a bit erratic lately and I think it's because of Scarlett. She's influencing me and I just clued in (ya, I'm slow off the start~imagine that!). I don't want to say she's moody but man, can she ever flip the "happy to sad", "screaming to happy" switch fast! The saying "Ain't nobody happy if mama ain't happy" should actually be "Ain't nobody happy if Scarlett ain't happy"! If she's screaming and gagging and pissy we all pay the price. No one can be fed, taken anywhere, or sleep for god's sakes! If she's happy we all get our rest, have time to spend with each other, and eat a hot meal...maybe even together!
Scarlett isn't the most stable, whether it's her health or moods, but she's been wicked lately. I believe that her behavior is the reason why I'm such a mess the last few weeks and my mood has been influencing others...trickle down theory I guess. Perhaps that's why I can't articulate why she's not herself, there's nothing to define or words to say exactly why she seems off. I felt this way when she was 2 months old and it took 6 months for a doctor to stop and look at her the way I do, to listen to her the way I have, and there was no "real" reason for me to feel that way when she was 2 months old but I did. I knew when I passed her over for the first MRI that there was something permanent, and not fixable happening to her. I was right. I've brought her into the doctor office on a Friday (over 6 months ago) because I knew she had an ear infection but nothing could be found. By the following Wednesday, we were in our local ER and she was in dire straights requiring oxygen, steroids, antibiotics, nebulizers and I told the doctor "I told you so". I was right again. Same feeling applies here I guess. Scarlett is normal (for her) and there's "nothing wrong" with her. But I feel like there is and, here I am yet again, trying to figure out why I think she's in trouble. You'd think I'd have it down pat by now but obviously I don't and if I have one more patronizing "There, there. You're just tired." or " Sure you do honey." I'm gonna cut someone. Seriously. I know how crazy I come across when the tests say she's fine and I'm saying she's not. I understand how I look so overtired and that's why people think I'm on the edge. I am overtired. I am worn down. Hey, I'm not saying I'm not. But being frazzled doesn't mean I'm wrong, either. Being right so many times before doesn't mean I'm right this time around too.
So here I am, trying to weed out what's going on with her while I'm fighting fatigue, hunger (like she's gonna let me eat), confusion, daily life full of a tween's headstrong arguments, three year old melt downs and dishes. Maybe that's why I can't figure her out; I'm not capable of fully listening to what she's saying, just enough to know there's something screwing with her but not enough to make it better (if I can). I'm surprised I haven't been committed yet! Oh well, off to start another day :)
I have been feeling a bit erratic lately and I think it's because of Scarlett. She's influencing me and I just clued in (ya, I'm slow off the start~imagine that!). I don't want to say she's moody but man, can she ever flip the "happy to sad", "screaming to happy" switch fast! The saying "Ain't nobody happy if mama ain't happy" should actually be "Ain't nobody happy if Scarlett ain't happy"! If she's screaming and gagging and pissy we all pay the price. No one can be fed, taken anywhere, or sleep for god's sakes! If she's happy we all get our rest, have time to spend with each other, and eat a hot meal...maybe even together!
Scarlett isn't the most stable, whether it's her health or moods, but she's been wicked lately. I believe that her behavior is the reason why I'm such a mess the last few weeks and my mood has been influencing others...trickle down theory I guess. Perhaps that's why I can't articulate why she's not herself, there's nothing to define or words to say exactly why she seems off. I felt this way when she was 2 months old and it took 6 months for a doctor to stop and look at her the way I do, to listen to her the way I have, and there was no "real" reason for me to feel that way when she was 2 months old but I did. I knew when I passed her over for the first MRI that there was something permanent, and not fixable happening to her. I was right. I've brought her into the doctor office on a Friday (over 6 months ago) because I knew she had an ear infection but nothing could be found. By the following Wednesday, we were in our local ER and she was in dire straights requiring oxygen, steroids, antibiotics, nebulizers and I told the doctor "I told you so". I was right again. Same feeling applies here I guess. Scarlett is normal (for her) and there's "nothing wrong" with her. But I feel like there is and, here I am yet again, trying to figure out why I think she's in trouble. You'd think I'd have it down pat by now but obviously I don't and if I have one more patronizing "There, there. You're just tired." or " Sure you do honey." I'm gonna cut someone. Seriously. I know how crazy I come across when the tests say she's fine and I'm saying she's not. I understand how I look so overtired and that's why people think I'm on the edge. I am overtired. I am worn down. Hey, I'm not saying I'm not. But being frazzled doesn't mean I'm wrong, either. Being right so many times before doesn't mean I'm right this time around too.
So here I am, trying to weed out what's going on with her while I'm fighting fatigue, hunger (like she's gonna let me eat), confusion, daily life full of a tween's headstrong arguments, three year old melt downs and dishes. Maybe that's why I can't figure her out; I'm not capable of fully listening to what she's saying, just enough to know there's something screwing with her but not enough to make it better (if I can). I'm surprised I haven't been committed yet! Oh well, off to start another day :)
Thursday, May 31, 2012
Everyone has those moments when their drained. We've gotten home from the hospital, just 24 hours ago, and now is time for the let down of built up anxiety, of pent up frustrations and upset. During our hospital stay Scarlett was low on oxygen (82-86, anything under 92 is a concern), she stopped breathing, her heart rate dropped from 101 to 44 while sleeping 3 times in a few minutes, her breathing slowed down, her heart rate dipped lower and lower, her xray showed her lung infection spread, she lost half a kg in weight, and I accidentally pulled out her g-tube. We were only there 9 days.
On top of that I was thinking of my boys, how they were being shuffled around (with people I love and trust, of course) and what was running through their heads. I was worried that I didn't have enough blended food, that my boys were missing me, that there were a zillion other things that I should be doing. The mental exhaustion is just as bad as the physical when you're trapped in the hospital with nothing but your thoughts and beeping of machines.
Scarlett is doing fine now. Or should I say she's doing "Scarlett fine" in which I mean that she's still facing her daily struggles and I along with her. But this journey has been the most taxing for whatever reason and I'm bagged. The stresses that present themselves in those situations are increased ten fold and I even had a run of visitors this time! The diversions that my friends provided was amazing and yet I feel worse off then usual. I even came home to cooked meals and a plant.
However, being on this trip I have had clinical confirmation of the issues I felt were going on and, that my friends, is the hardest. I've seen the changes, both good an bad in her, but seeing how bad she really is in concrete medical form is daunting. I watched as her heart rate limit was lowered because she kept setting it off, time and time again. I watched her respiratory monitor tell me that, although she was breathing, she was slowing down to near breathlessness (3 on the monitor) time and time again. The impact of watching that all day, for nine days, takes it's toll.
My youngest boy has been stuck to me all day, crying when I'm out of sight, holding my arm saying how much he loves me and requesting hugs like it was all he needed to sustain him. My oldest has been a bit distant and I think it's because he resents me being taken from him again but feels bad about it because he knows it wasn't his sister's fault. He's a complex thinker and sometimes he won't talk to me until he can sort out his own feelings. So when I'm gone, I know how hard it is on my whole family; not just me and Scarlett.
And this is my life. The extreme highs and lows. I'm not complaining, just venting more than anything. The plethora of feelings wash over me and it's hard to absorb what I'm truly feeling before something else takes hold. I feel like lashing out and I don't know if it's just because I'm over-tired or if it's from the feeling of helplessness that I abhor. What's more is that I have a TON of work to do; going to the hospital is a make-work program to which I'd love to decline from. As if I didn't have enough on my plate, I have to re-orientate myself to where my children and their lives are because I missed sooo much, I have to contact everyone and their mother about follow-ups and drugs, and keep up on the stuff I couldn't do that needs to be done while I was away. *Sigh* Yeah, I guess I am complaining a bit.
Then there's the feeling of guilt that my friends have taken time away from their family to provide for mine, the babysitting, the dinner, the school papers...I feel bad that they need to step up because I can't. A mother, or at least this mother, can't handle needing others to get by and run their house but I have to. And it kills me I can't do it on my own; as much as I know I can't. There's just too much and I'm just one run-down person.
I don't know where I was going with this post or exactly what I wanted to say but I just needed to write. I know I'm not the only person who goes through something like this and I'm not sure if that comforts me or if it makes me sad to know there are others out there struggling to keep sane and just make it through the day. Either way, I just needed to put my thoughts down and maybe it'll help me tomorrow.
On top of that I was thinking of my boys, how they were being shuffled around (with people I love and trust, of course) and what was running through their heads. I was worried that I didn't have enough blended food, that my boys were missing me, that there were a zillion other things that I should be doing. The mental exhaustion is just as bad as the physical when you're trapped in the hospital with nothing but your thoughts and beeping of machines.
Scarlett is doing fine now. Or should I say she's doing "Scarlett fine" in which I mean that she's still facing her daily struggles and I along with her. But this journey has been the most taxing for whatever reason and I'm bagged. The stresses that present themselves in those situations are increased ten fold and I even had a run of visitors this time! The diversions that my friends provided was amazing and yet I feel worse off then usual. I even came home to cooked meals and a plant.
However, being on this trip I have had clinical confirmation of the issues I felt were going on and, that my friends, is the hardest. I've seen the changes, both good an bad in her, but seeing how bad she really is in concrete medical form is daunting. I watched as her heart rate limit was lowered because she kept setting it off, time and time again. I watched her respiratory monitor tell me that, although she was breathing, she was slowing down to near breathlessness (3 on the monitor) time and time again. The impact of watching that all day, for nine days, takes it's toll.
My youngest boy has been stuck to me all day, crying when I'm out of sight, holding my arm saying how much he loves me and requesting hugs like it was all he needed to sustain him. My oldest has been a bit distant and I think it's because he resents me being taken from him again but feels bad about it because he knows it wasn't his sister's fault. He's a complex thinker and sometimes he won't talk to me until he can sort out his own feelings. So when I'm gone, I know how hard it is on my whole family; not just me and Scarlett.
And this is my life. The extreme highs and lows. I'm not complaining, just venting more than anything. The plethora of feelings wash over me and it's hard to absorb what I'm truly feeling before something else takes hold. I feel like lashing out and I don't know if it's just because I'm over-tired or if it's from the feeling of helplessness that I abhor. What's more is that I have a TON of work to do; going to the hospital is a make-work program to which I'd love to decline from. As if I didn't have enough on my plate, I have to re-orientate myself to where my children and their lives are because I missed sooo much, I have to contact everyone and their mother about follow-ups and drugs, and keep up on the stuff I couldn't do that needs to be done while I was away. *Sigh* Yeah, I guess I am complaining a bit.
Then there's the feeling of guilt that my friends have taken time away from their family to provide for mine, the babysitting, the dinner, the school papers...I feel bad that they need to step up because I can't. A mother, or at least this mother, can't handle needing others to get by and run their house but I have to. And it kills me I can't do it on my own; as much as I know I can't. There's just too much and I'm just one run-down person.
I don't know where I was going with this post or exactly what I wanted to say but I just needed to write. I know I'm not the only person who goes through something like this and I'm not sure if that comforts me or if it makes me sad to know there are others out there struggling to keep sane and just make it through the day. Either way, I just needed to put my thoughts down and maybe it'll help me tomorrow.
Thursday, May 24, 2012
Not where I want to be
I don't know about anyone else when it comes to this. I can only rely on my own feelings and thoughts but I'm sure I can't be the only one. I'm positive that parents, upon hearing their child is/may die soon, dream up the scenario in their heads (and hearts) of the when and how. Well, yet again I got a kick in the pants with my "fantasy" moment. Two months ago I had that slap upside the head, with my three year old in tow, on the side of the road with purple babe in hand, trying to bring her breath back. And, just a half hour ago, I got another reminder that the "dream" of Scarlett passing in my arms at home isn't as realistic as I would hope.
She has apnea spells, the reason is yet to be determined. They used to last only 15 -20 seconds. But then they slowly increased in duration and frequency. Want to see a grown person go sheet white in a heartbeat? When someone holds Scarlett and she stops breathing, so does the person and their face becomes awashed in panic. To me it's normal. Until today. Today I watched the monitor fall and her chest stop. We are in the hospital, have been for 3 days. Her lung infection is growing, despite relentless drugs, despite our best efforts. She's never been a quitter and I will not give up on her either. But having that damn machine sound alarm, hearing the footsteps run down the hall to our room concreted that a quiet, peaceful moment is unlikely for my daughter if her time is to come. I don't like that useless feeling, that I can't control the when and how, that I can't stop it no matter how hard I try. I have accepted that she's not here for a long time, or have I?
I read somewhere that parents like me go through the stages of grief over and over and over because our life is constantly in flux, dreaming of a family vacation, wondering if death is coming today, hoping to have a seasonal moment with your child before it's too late. I planned on getting professional pictures of my family when it finally looks like spring up here. I even ordered Scarlett a dress which should be here in a few weeks. Now I'm kicking myself for waiting. I may have waited too long. And then again, she could get better and we could go home next week. I don't know. As hard as I may have tried, I've gotten bogged down in the daily crap, in maintaining Scarlett and trying to do things that really don't matter, and I stopped living in the moment with her. I stopped realizing that, as much as I know it, tomorrow isn't guaranteed for my daughter. I think I stopped feeling it so I could just get through the day. But, being here in the hospital with her, there is little else to do but think of what time I've squandered with my entire family.
And now that she's suddenly awake, I'm going to spend time with her even though this isn't all I wanted to post. She's no longer going to wait for me to finish anything before her. Nothing else matters.
She has apnea spells, the reason is yet to be determined. They used to last only 15 -20 seconds. But then they slowly increased in duration and frequency. Want to see a grown person go sheet white in a heartbeat? When someone holds Scarlett and she stops breathing, so does the person and their face becomes awashed in panic. To me it's normal. Until today. Today I watched the monitor fall and her chest stop. We are in the hospital, have been for 3 days. Her lung infection is growing, despite relentless drugs, despite our best efforts. She's never been a quitter and I will not give up on her either. But having that damn machine sound alarm, hearing the footsteps run down the hall to our room concreted that a quiet, peaceful moment is unlikely for my daughter if her time is to come. I don't like that useless feeling, that I can't control the when and how, that I can't stop it no matter how hard I try. I have accepted that she's not here for a long time, or have I?
I read somewhere that parents like me go through the stages of grief over and over and over because our life is constantly in flux, dreaming of a family vacation, wondering if death is coming today, hoping to have a seasonal moment with your child before it's too late. I planned on getting professional pictures of my family when it finally looks like spring up here. I even ordered Scarlett a dress which should be here in a few weeks. Now I'm kicking myself for waiting. I may have waited too long. And then again, she could get better and we could go home next week. I don't know. As hard as I may have tried, I've gotten bogged down in the daily crap, in maintaining Scarlett and trying to do things that really don't matter, and I stopped living in the moment with her. I stopped realizing that, as much as I know it, tomorrow isn't guaranteed for my daughter. I think I stopped feeling it so I could just get through the day. But, being here in the hospital with her, there is little else to do but think of what time I've squandered with my entire family.
And now that she's suddenly awake, I'm going to spend time with her even though this isn't all I wanted to post. She's no longer going to wait for me to finish anything before her. Nothing else matters.
Sunday, May 13, 2012
Mother's Day Meltdown
It's Mother's Day. This is normally a day I don't pay much mind to but, for whatever reason, I'm really sentimental. Honesty a weird feeling for me. Usually this is just another day filled with dishes and laundry, meltdowns and hugs, timeouts and snuggles. But when I opened the gifts that the kids had made me at school I cried. Here's why:
(From Carson 3 year old) A unique Popsicle frame with his hand print and this verse....
I miss you when we're not together
I'm growing up so fast
See how big I've gotten
Since you saw me last?
As I grow, I'll change a lot,
The years will fly right by.
You'll wonder how I grew so quick
When and where and why.
So look upon this hand print
That's hanging on your wall
And memories will come back of me,
When I was very small.
As I read Carson's gift I started to tear up because, normally, all the kids in the class get the same thing. I knew that this verse wasn't true for Scarlett because she may not get bigger, she may not grow, and I will not have memories come back to me when she is older. It made me sad that I read Carson's gift and thought of Scarlett. I did not want to open her gift because I knew what it would say. I was wrong.
(From Scarlett 2 year old) Same frame, completed by Jess at Strong Start, foot print and this verse...
Scarlett has a certain way
Of growing bigger everyday,
Her little feet and special smile
Will stay in our hearts a long, long while.
I cried because Jess had changed the verse because of Scarlett's conditions. Because she knew that it's not likely that Scarlett will get that far. And it upset me because she had the forethought to change it; she was trying to give me something more appropriate.
(From Cole 9 years old) A card that he wrote telling me that he likes spending time with me. That was hard because I don't spend time with him and I felt like I was being stabbed in the heart. He also made a laminated card that said he liked making cookies with me and had drawn a picture to go with it. I cried again because I don't make cookies with him anymore. I haven't since Scarlett was very little. It was something only the two of us did and now we never do.
Eff'n kids! I laughed afterwards about how sad it all made me because that wasn't the point. I guess I was just weepy and needed the excuse to cry. I know, I know, everyone feels like they're not doing enough for their kids at some point but I KNOW that I can't meet all their needs and it kills me.
I read on a blog comment that this woman, growing up, had the stress of living with a younger disabled sibling and, as she put it, was faced with the horrible, welcoming thought that if the child died she'd get her parents back and how wrong it felt to have that on her mind at 8 years of age. Then, a few days later, Cole's teacher called because Cole requested counseling (at her suggestion) because our house is so stressful. I'm all for it if Cole needs to talk to someone...someone more objective than myself. But it made think of this woman's writing and I wish there was something I could do to alleviate his stress. I can't really but I wish I could.
I realize that I'm kinda a downer and my last post said that I was going to look on the bright side but I'm still allowed to have my moments of blah, right? I have been happier with my family and more positive (I think) and we have been nicer to each other - likely due to the less stress I'm putting on everyone. Bedtimes still suck royally, drugs are still being made, pumps still need charging but it's a work in progress and I think we're finally starting to get the hang of it. I had my little *sniff sniff* and it's over so now it's onto dinner and spending time with my family.
(From Carson 3 year old) A unique Popsicle frame with his hand print and this verse....
I miss you when we're not together
I'm growing up so fast
See how big I've gotten
Since you saw me last?
As I grow, I'll change a lot,
The years will fly right by.
You'll wonder how I grew so quick
When and where and why.
So look upon this hand print
That's hanging on your wall
And memories will come back of me,
When I was very small.
As I read Carson's gift I started to tear up because, normally, all the kids in the class get the same thing. I knew that this verse wasn't true for Scarlett because she may not get bigger, she may not grow, and I will not have memories come back to me when she is older. It made me sad that I read Carson's gift and thought of Scarlett. I did not want to open her gift because I knew what it would say. I was wrong.
(From Scarlett 2 year old) Same frame, completed by Jess at Strong Start, foot print and this verse...
Scarlett has a certain way
Of growing bigger everyday,
Her little feet and special smile
Will stay in our hearts a long, long while.
I cried because Jess had changed the verse because of Scarlett's conditions. Because she knew that it's not likely that Scarlett will get that far. And it upset me because she had the forethought to change it; she was trying to give me something more appropriate.
(From Cole 9 years old) A card that he wrote telling me that he likes spending time with me. That was hard because I don't spend time with him and I felt like I was being stabbed in the heart. He also made a laminated card that said he liked making cookies with me and had drawn a picture to go with it. I cried again because I don't make cookies with him anymore. I haven't since Scarlett was very little. It was something only the two of us did and now we never do.
Eff'n kids! I laughed afterwards about how sad it all made me because that wasn't the point. I guess I was just weepy and needed the excuse to cry. I know, I know, everyone feels like they're not doing enough for their kids at some point but I KNOW that I can't meet all their needs and it kills me.
I read on a blog comment that this woman, growing up, had the stress of living with a younger disabled sibling and, as she put it, was faced with the horrible, welcoming thought that if the child died she'd get her parents back and how wrong it felt to have that on her mind at 8 years of age. Then, a few days later, Cole's teacher called because Cole requested counseling (at her suggestion) because our house is so stressful. I'm all for it if Cole needs to talk to someone...someone more objective than myself. But it made think of this woman's writing and I wish there was something I could do to alleviate his stress. I can't really but I wish I could.
I realize that I'm kinda a downer and my last post said that I was going to look on the bright side but I'm still allowed to have my moments of blah, right? I have been happier with my family and more positive (I think) and we have been nicer to each other - likely due to the less stress I'm putting on everyone. Bedtimes still suck royally, drugs are still being made, pumps still need charging but it's a work in progress and I think we're finally starting to get the hang of it. I had my little *sniff sniff* and it's over so now it's onto dinner and spending time with my family.
Tuesday, May 1, 2012
Inspired by a Father's Love
I don't know how exactly to start this post. Yesterday I read, for the first time, about Avery. She has SMA and is terminal. Her parents have to watch her precious body slowly shut down. She wasn't supposed to make it to two years. Her dad started a bucket list for her and it went wide! I read the blog post about her and I could relate; watching your child gain and lose abilities, living in the moment because what may be coming next will break your heart, surrounding your family in love and teaching others about your life and those of others in similar situations.
And then today I read that, just three days after a thumbs up doctor visit, just 15 minutes after her smiling picture was taken, her lungs collapsed and she died. Her father posted a loving letter "by" Avery. I didn't know about this child until yesterday. Not that her story wasn't compelling, but I've read a thousand of these posts and I live it everyday so as much as I felt for this family I wasn't affected that much. Until I read that she so suddenly died. I wanted to scream. I wanted to break down. Not for only this child and her family but more so for my own.
Scarlett has been having some issues lately and she had a close call last week. Not 911, hooked up in the hospital, close call. But suddenly there I was on the side of the road, three year old strapped in his seat watching everything, praying that this wasn't how it was all going to go down. She's fine now but the whole situation jarred me to the core.
Conversations lately with separate individuals have centered around Scarlett's "pending doom". Doctors have started asking about DNRs again ( we went in for antibiotics not anything that serious). Coupled with my previous feelings, this all makes me nervous. But it also leaves me with the question of whether the universe is trying to tell me, warn me, of what's coming next or are theses comments and situations happening because I'm putting that feeling onto others who are simply reinforcing what I'm thinking? Food for thought.
Reading about Avery has left me with a new perspective. Her father, Michael, has been quoted as saying, “We can watch her die, or we can let her live.”. I want to watch Scarlett live. It's a hard, fine line to travel as I am always required to be on guard for every symptom, sign, and compiling evidence that she needs help- to ignore the smallest thing could impact her health greatly. It's always like I'm looking for the worst, waiting for her to die (waiting, not wanting) because her health degrades so fast. Reading today what Michael said clicked for me. I will not ignore Scarlett's overlapping issues but I will try to see past them, see the child through the complications, and love her to live.
The suddenness of Avery's passing reflected my own fears about Scarlett. Her father has unknowingly affected me with his words and his courage in the most devastating time in his life. I hope that, even though never actually meeting his precious Avery, she has changed not only my view on life but those of others too. Thank you Michael and Avery for inspiring me to be better for my daughter and for my family.
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